Madi's Story

Memories Capture by Photography by Eiko

Madi is a very strong little girl who can put a smile on anybody’s face. Madi loves watching Baby Einstein, listening to music, swinging on her swing set, playing with musical toys, relaxing in her crib and going to school. Madi loves school!

Madi was born healthy and it wasn’t until she was 7 months old her family noticed changes. Madi was unable to sit up on her own unassisted without falling over. After visiting a paediatrician, it was clear something wasn’t right so a number of tests were conducted. A muscle biopsy, MRI of the brain, genetic testing and several other tests came back with no answer. However, Madi’s paediatrician noticed traits that lead him to test for Rett syndrome, a genetic mutation that causes neurological impairment. On May 22 2012, Madi’s test results for Rett syndrome came back positive.

Madi has been affected by Rett syndrome in every part of her body; she cannot walk, crawl or stand on her own. She also cannot say any words. Her family is very unsure what the future holds for this beautiful little Tiny Light. Mom Kalle, Stepdad Ryan and baby sister Camryn just hope Madi can make the most of her life and be happy.